An Evaluation of a Resource Book for Parents of Children Newly Diagnosed with Autism Spectrum Disorder

Background: For parents of a child with Autism Spectrum Disorder (ASD), the uncertainty surrounding diagnosis combined with the emotional distress related to coping with their child’s symptoms can make diagnosis a uniquely stressful experience for parents.

 Objectives: This study sought to evaluate a newly published information book for parents of children diagnosed with ASD. The book, entitled, “Autism Spectrum Disorder: Information for Parents”, was developed in 2003 at The Hospital for Sick Children, Child Development Centre (CDC).
Methods: This study involved (1) a review of the educational book by parents and autism service providers and (2) participation in a 2 hour focus group session.  A purposive sample of 13 participants were invited to review the parent information book and participate in one of three follow-up focus group discussions where they were asked their opinions about the content, usefulness and accessibility of the booklet.
Results: The feedback from these focus groups suggests that parents and autism service providers are currently in need of a concise yet comprehensive psycho-educational resource at the time of diagnosis. Feedback found the booklet to be useful, accessible and - most importantly for parents - warm, friendly and hopeful in tone. In addition, parents expressed a substantial need for more guidance and information regarding resources for their child than they are currently receiving.
Conclusions: Interventions tailored to the specific needs of parents during the diagnostic process are lacking.  Based on the findings of these focus groups, the application of a concise and hopeful psycho-educational resource at the time of diagnosis such as this booklet should be considered a useful and helpful intervention.